depressants (medications that can cause drowsiness).  Alcohol, hot weather, exercise and fever can cause dizziness.  To prevent dizziness or fainting, sit up or stand slowly.  Caution should be used prior to driving or operating machinery until you know how your body reacts to the medication.  Amitriptyline can cause increased sensitivity to the sun, avoid prolonged exposure.  This medication may be harmful to an unborn baby and has been shown to pass into breast milk.  If you are over the age of 60, you may be at an increased risk to experience drowsiness, dizziness, unsteadiness and low blood pressure therefore your doctor may prescribe a lower dose.  Stopping this medication abruptly can cause nausea, headache and malaise. 

Adverse Effects:  Common side effects while taking Amitriptyline include:  dry mouth, drowsiness, dizziness, headache, nausea, diarrhea, heartburn, unpleasant taste, weight gain or an increased appetite--especially for sweets.  Check with your doctor if they become bothersome --these side effects generally go away as your body gets used to the drug.  Check with your doctor as soon as possible if you experience:  constipation (especially in the elderly), blurred vision,  eye pain, fainting, fast or irregular heartbeat (pounding, racing, or skipping beats),  loss of balance control, problems urinating, shakiness, twitching of the face, mood swings, confusion, difficulty speaking or stiffness of arms or legs.

This is only a partial list, some people may experience side effects other than those listed.  Check with your doctor if you are concerned about other symptoms you may be experiencing while taking this or any other medication. 

Dosage:  For depression, amitriptyline is frequently started at 25 mg. taken 3 times a day, and then gradually increased as necessary.  Max. Dose is 300 mg. /day.  In neuropathic pain dosage can vary according to the person’s age, medical conditions and cause of pain.  It is usually started at 25 mg. taken at bedtime and increased weekly until reasonable pain relief is obtained.  Some medical sources recommend a higher starting dose. The usual maximum dose is 150 mg. /day.  Your doctor / neurologist may recommend a different dose from the one listed.  Amitriptyline is supplied in strengths of 10 mg., 25mg., 50mg. and 75mg. tablets.

   ** For educational purposes only, for additional information on this or other medications please contact your doctor or pharmacist.  Ensure to inform your doctor about all prescriptions, over-the-counter, herbal medications and supplements you are taking prior to taking any medication.

Dr. Anthony Kaufmann, Medical Advisor to the TNAC has agreed to answer your questions.  If you have a question for Dr. Kaufmann, please send it to the newsletter at newsletter@tnac.org by e-mail, to Jan at (403) 295-0987 by phone or mail to TNAC Newsletter, #207 15 Everstone Dr. SW, Calgary, AB, T2Y 5B5

Question 1:    I am a 36 year old male diagnosed with TN by my family doctor.  I had a CT scan and an MRI followed by a consultation with a Neurologist.  By the time I saw the neurologist the pain was on both sides of my face.  He had me do things like walking a straight line, and touching my nose with my fingers.  He diagnosed my condition as "Chronic Migraines".  My question is how fine a line is there between Chronic Migraines and TN?

Answer:  There is usually little difficulty to distinguish between the diagnosis of TN and chronic migraines.  In both cases, the doctor reaches a conclusion based on a thorough history of your pain complaints.  There are not any special tests for either condition, except for trying specific medications that may be effective (ie. Tegretol for TN).

Question 2:    I had trigeminal neuralgia from 2003 to 2004 secondary to a petroclival meningioma and I took the whole load of usual meds and upped the doses each time my pain would get worse and am followed by a pain center.  I decided in 2004 to have a balloon compression.  Unfortunately I now have a deafferentation pain and have had it since the compression July 2004.  I am still on many meds and almost always try the new meds and now an on sativex as well as nortriptylline, Trileptal, Clonazepam, for the pain.  I saw a Dr. in Toronto a few weeks ago concerning a motor cortex stimulation.  What is your opinion of this?

Answer:  This is another question that highlights the problems related to diagnosis of face pain conditions.  It is quite rare to have true Trigeminal Neuralgia related to a tumor.  A tumor more often causes nerve irritation or injury resulting in a constant achy pain and associated numbness in the face, a condition called Trigeminal Neuropathy.  Conversely, Trigeminal Neuralgia is caused by a pulsating blood vessel against the Trigeminal nerve (or rarely multiple sclerosis).  In 1 or 2 patients out of 100 I have seen such a neurovascular compression causing Trigeminal Neuralgia in a patient who also had an overlying benign tumor.  

There is no clear answer whether motor cortex stimulation will be helpful in your situation.  This is an investigational treatment that has the potential to reduce or relieve a variety of pain conditions.  The procedure is generally considered as a last resort when conventional therapies have failed.   The motor cortex stimulation procedure itself can be relatively straight forward, and involves a small opening of the scalp and skull to place wire electrodes over the brain surface.  These wires are tunnelled under the skin to a battery pack placed beneath the collarbone.  When "turned on" a gentle electrical stimulation is delivered to the brain surface and can be adjusted with the aim of reducing pain in the face.  There is currently very little experience using this treatment for face pain and therefore it is difficult to give predictions about the likelihood of success.  That said, the option of motor cortex stimulation is reasonable for some patients that have gone through thorough trials of standard treatments, often administered through a comprehensive pain clinic.  In the future we hope to have better knowledge about who may benefit most from this interesting "neuromodulation" procedure. 

Prepared by Jan Williams, Calgary

Kelly Wisniak, Pharmacist, Shopper’s Drug Mart gave an overview of some new drugs being developed plus discussed dosages and effects of the more common drugs.   (Most of these drugs have been profiled in previous newsletters so I am just including highlights here)

Tectin

This drug is in its final stages of testing and has shown very good results.  It is taken from the Puffer Fish.   The testing has focussed on treating pain caused by cancer.  The drug affects the pain receptors – unlike other drugs like narcotics, this one does not seem to have a big effect on the whole body so side effects are expected to be few.

Lyrica (Pregabalin)

This is a new drug developed by the company that produces Neurontin (Gabapentin).  Lyrica is related to Gabapentin but is much more potent and has fewer side effects.  It does not seem to cause low sodium levels and has very few interactions with other drugs.   The dosage can be “ramped up” much quicker than other drugs and it can be decreased in a shorter period of time when it is no longer needed.

One side effect I’d like is that it does cause euphoria in some people.

For those of us in Alberta, it is not yet covered by Blue Cross unless you have special permission.  There is a form to request this that can be obtained from your pharmacist or doctor.

Tegretal (Carbamazepine)

People who are on Tegretal and who have drowsiness at certain times of the day might find it better to take the drug at regular intervals – like every 6 or 8 hours or to use the “Controlled Release” tablets.   Usually people can decrease the total daily dose slightly if they take the drug at regular intervals.

Trileptal

Is similar in action to Tegretal (Carbamazepine), but because it is more potent there are fewer side effects.    

Topamax

This drug is used primarily for migraines but there have been some people who find it beneficial for TN.

General Hint:  If you are travelling and run out of your drug usually your pharmacist back home can fill your prescription and ship it to you wherever you happen to be – even outside of Canada.

By Ray Harvey

My life is good, very good in fact. I’m married to My Sweetie, a wonderful woman.  Coffee shops are my natural milieu. Every morning after a power walk I head for the local coffee shop, to chat, drink coffee and read the newspaper. I’ll be able to study French there when the course gets started in January 06. You probably guessed that I am retired.

There is just one niggling issue and that is the TN. About five years ago as the shower water poured into my open mouth the electrical storm came from nowhere, lasted 20 seconds or so, and went somewhere. A year later it happened again while I was stressed out and dithering over whether to buy new ski boots and skis. Two days later, again, just as I took the first bites of a delicious chicken dish My Sweetie had made for dinner. We called our dentist to interrupt his dinner, and he suggested, you guessed it, TN.

Our GP referred me to a neurologist who checked me thoroughly and suggested that I keep an eye on things for now because two attacks wasn’t much in the grand scheme of things.  Another year went by and one night I woke up with electricity running freely through the side of my face. It just wouldn’t stop.   I started on Tegretol which eventually calmed the nerve.

I had an MRI.  The results showed a small, inoperable something deep in my brain stem.  It is not cancer and not likely associated with the TN.

We decided to try a radiofrequency percutaneous rhizotomy.  In the end I had three of them. The first time the surgeon missed the nerve. The second time there was plenty of burned something, but no positive result.   The third one was not effective either.  After three horrifying procedures I had a small patch of numbness under my lower lip to show for it.   I was now taking four different drugs: Tegretol, gabapentin, levetiracetam, and Topamax.    All these drugs got rid of the pain but made my life totally difficult.  I was teaching at a college while all this was going on!!

My Sweetie, who is a health professional, put her contacts to work and found Dr. Kauffmann in Winnipeg and arranged to get me in there for a GammaKnife procedure in Dec 04.   The day before the procedure he gave us a consultation and checked us over with the usual neurological wrestling match type examination.  

The next morning the patients assembled at 5 am, I believe it was. Dr. Kaufmann, his amiable, most able assistant, nurse Janice Nesbitt, and another Dr., some sort of astro physicist or neutron doctor, or something like that, who helps with the mathematical calculations, affixed this sort of Knights of the Round Table helmet frame to my head. The procedure consists of freezing in the head by needle (yuck) and then 4 screws screwed into the head. No, it does not penetrate the skull and into the brain. The screws are really pressure points more than anything else. It's the needles that make me feel weak in the knees -- good thing the patient sits down for this.

The helmet allows the medicos to fix the head down for the MRI, CT scan and the GammaKnife. This assures that all is lined up exactly the same for each procedure.   The MRI takes about 15 minutes, the CT about 2 minutes and the GammaKnife about 30 minutes.

In Winnipeg they offer a selection of music to listen to while the GammaKnife is going on. "The Eagles". Perfect. "I was standin' on a corner in Winslow, Arizona." The next thing I remember was a nurse jiggling my leg and asking, "Ray, Ray, did you fall asleep?" Hmmm. Well, yes I did so I can't really say what the actual GammaKnife was like because I slept through the whole thing.

Did it work? It’s unknown at this time, 10 months later, but I am slowly and steadily reducing the drugs without incident so far. Like everyone else in our boat, I face an uncertain future. But, I am enjoying life in my usual enthusiastic, inquisitive way and there is nothing better.

If you are wondering why you did not receive a Medical Information Card in the November newsletter, it is because you did not request one. Any paid up member who  wishes a card may get one, but they must  be requested, as stated in  “Marion’s Desk”, March , April and May, 2005 newsletters

          I have some good news for all TN members about a new drug called Lyrica.  In our April edition of the TNAC news, this drug was featured as the Drug of the Month. 

As I was having my usual walk in Costco, a Lethbridge Doctor tapped me on the shoulder and said “ Marion, I just want to let you know that Lyrica is now available in Canada”.  When asked if it was covered under the Medical Health Plan, he said he didn’t know, but  said “ we have samples”.  So, if your present medication is not satisfactory, ask your Doctor about Lyrica and ask for samples if necessary.

          I understand this drug is more tolerable than Tegretol or Trileptal and is having quite a bit of success, not only with TN patients but patients with MS and TN of whom I have spoken with.  A member of our group who is at present on this drug says it has been very good for her as she has had no pain for 7 weeks and above all does not have an upset stomach, and can tolerate them.

          I have ordered another set of “Striking Back Books”.  If any of you would like to purchase one, please let me know.  The price is $40 which includes shipping.  I did inquire at Chapters and they quoted me $ 52.50.  We also have our TNAC pins for sale ($5.00).You may also purchase them from your Support Group Leaders.

          For our Quebec friends, we do have a surprise for you.  We have added 2 French language sites to our website – www.tnac.org.  Please log on to:  Sherbrook University - www.neurochirurgie.ca/  and the Association Québécoise de la nevralgie du trijumeau (AQNT) – www.aqnt.org.  At present, we are negotiating with Stephane Bourque to see if he would be willing to translate our newsletters for you, and hopefully, we will be able to accomplish this in the near future.

          Thank you again for all the kindness shown to me during my recent illness.  Until next year -

MERRY CHRISTMAS - JOYEUX NOEL - HAPPY HANUKAH

HAPPY NEW YEAR - 2006

Marion

Dear TNAC:

I wonder if you could update your website to indicate that the Quebec Gamma Knife has been up and running since August 2004 and more than 80 patients with TN have been treated.  Early reports in the medical literature are positive with very few side-effects and none of the risks of open surgery. 

We have treated patients up to age 86 with no overnight hospital stay and our quality evaluation questionnaire indicates more than 95% satisfaction with the experience.  We are happy to accept any patients referred by their MD whether family doctor or specialist.  Patients from provinces outside of Quebec can usually get authorization from their own healthcare in order to get coverage for the treatment

For contact information please consult the Elekta website (www.elekta.com) where all contact information is listed.
Thank you,

 

Brendan Kenny, MD
Director, Quebec Gamma Knife
CHUS
Sherbrook, QU.

Thank you Lethbridge Group

When I first got trigeminal Neuralgia I didn’t know what was wrong.  The doctors didn’t seem to know either.  The morphine they gave me didn’t take away the pain, it only made me sick.  I was told I was having cluster headaches, migraines or earaches.  I knew the pain I was having was different.  After some time I was diagnosed as having trigeminal neuralgia and told that I would have future attacks.  I dreaded the future and hopelessness of this illness. 

Then I found out about a support group in Lethbridge.  After attending my first meeting I had hope that there was help available.  It was a relief to know that there were others out there that had Trigeminal Neuralgia.  I was not alone!   At the Support Group meeting in June of 2000 I met Marion Guzik, our President.  Her dream was to get all of the people with TN in Canada together and to have independent support groups across Canada.  She worked many long frustrating hours, with very little help and no funding to make this happen.   Now, after only five years we have our charitable organization status from Revenue Canada, we are known as a non-profit society with support groups in many of the provinces.

How many information packages and newsletters go out each month thanks to Marion and the rest of the Board members?  How many people have been helped and encouraged by a phone call to Marion and by the information she passed on to us at our meetings.  By setting up presentation, attending conferences, gathering information and letting others know of TNAC.  She has helped us to become visible among the medical professionals, many who haven’t a clue what TN is all about.

Now that Marion is stepping down as President, let us not forget the many sacrifices she made to bring the TNAC to where it is today.  Now it is up to someone else to look after funding to get other support groups started and to keep TNAC going.  Marion has done her share!

Thank you Marion.

          Erna Janzen

I just wanted to make a comment about the Depression article which was included in last month's newsletter.

          How ironic that you chose to print that particular article at that time.  I had just been diagnosed with depression a week prior to reading it.

          I had been experiencing very mixed emotions and a lot of stress since having my trigeminal neuralgia present on the "good side" of my face, after years of pain and treatment on the other side.  I figured I had overcome all the trauma associated with TN, but it all came tumbling back when those familiar twinges started appearing on the opposite side of my face.

          Fortunately, I immediately went to see my family doctor who prescribed medication for me which has been a tremendous help!

          Thanks for the article, and thanks for all the information you provide in your newsletters.  I look forward to them every month!

Happy Holidays everyone!

From Kathy in Toronto...

I asked a while back in the newsletter and in the Toronto group what the expectations are of our head office in Lethbridge and the expectations of the Toronto group. This is the feed back I received:

·         From the head TNAC office - "more structure"

·         From the Toronto group "to provide support and to publicize Trigeminal Neuralgia", as much as possible.

I've been in a great deal of pain the last 5 weeks and I'm trying to receive more information on "Lyrica". I asked my family doctor if I could start Lyrica while coming off Neurontin slowly. He has no information on Lyrica and TN. If anyone has information that I could pass onto him I would appreciate it.

          Thanks – Kathy Somers, 905-853-9849    kathleen_somers248@hotmail.com

New members

Dwayne Ring – Penticton, BC

Marilyn Richards – Coaldale, AB

Donald McDonnell – Barrie, ON

Tracy Petrisor – Diamond City, AB

Donations

Cora Rafuse – North Battleford, SK

Robert Dunlop – Ottawa, ON

Pat Buchanan – Winnipeg, Man.

Mona Wells – Lethbridge, AB

Helen Scheuerman – Calgary, AB

Audrey Halowaty- Riverton, MB

DONATIONS FOR CALGARY SUPPORT GROUP:

John Block – Calgary, AB

IN MEMORY OF HEATHER SCULLY:

John and Terry Scully – Ottawa, ON

Calgary, Alberta

Next Calgary Support Group Meeting:
      Saturday, Jan 14, 2006
Time:  1:30 pm
Calgary Co-Op Community Room
8818 MacLeod Trail South
Contact Jan at 295-0987 or email calgary@tnac.org

We had a great meeting in November –  with 12 members there.  Kelly, our Pharmacist was able to share lots of information and answered many questions.

It was especially great to see Paul from Olds who was 19 days post op from his MVD done by Dr. Kiss.  He felt so good that he wanted to share his experience with us.     

Lethbridge, Alberta

Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on 2 pm Saturday, Jan 14, 2006 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge. 

Due to the heavy schedule of some of our Members, we have again decided to hold our Christmas Party at our January meeting.

Wishing you all a Very Merry Christmas and a Happy New Year. - Marion

Contact Marion Guzik at 403-327-7668.  or lethbridge@tnac.org

Toronto, Ontario

The Toronto Chapter will not meet during the month of December. Next meetings are Sunday January 29th/06 and February 26th/06. We meet at "Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ont." 9:30 a.m. You do not have to be a member of TNAC to come out to meetings. Just bring your story and a smile and a laugh.

We have a fundraiser going on right now. Our writing pens have arrived. If there is anyone that can't make the meetings that would be interested in selling pens please contact:  Kathy Somers, 905-853-9849    kathleen_somers248@hotmail.com  or perhaps you would just like to support the group by purchasing a pen.  They make great stocking stuffers.  We will use the money to publicize TN, purchase 2 TN books for the Toronto public library system, and 1 for the Toronto Chapter to lend to anyone interested in looking at the book before purchasing.

I would like to thank everyone who comes out to the "Toronto Chapter" for their support and coming out to meetings. Our group seems to be growing, and are a wealth of information.  Have a wonderful holiday season to all, and a very happy 2006.

"TOGETHER WE WILL END THE PAIN”

For more information, please contact Kathy Somers (905 853-9849) or Sandra Arangio (905 284- 9215) or email toronto@tnac.org

Vancouver and Lower Mainland BC

2006 MEETINGS:  The Boardroom, G.F. STRONG REHAB CENTRE, 4255 Laurel St. Vancouver (Laurel at West 26^th – one block East of Oak)

TIME: 10.30 am – 1.30 pm

DATES:         January 28     March 25

                   May 27                   July 29

                   Sept 30         Nov 25

Friends, family and supporters are welcome to attend meetings.

For More information or to talk with someone who has TN contact:  Ann Hopkins,  Volunteer Coordinator, TN Support Group.  Phone: 604 732 1673 or Email:  annhopkins@shaw.ca

Happy December to everyone! My grandkids are getting so excited now that it’s less than a month to Christmas. Me, well I haven’t even got my tree or decorations up yet. I’d better get it done this week though because I’m already hearing about my lack of attention from the grandkids. I do have almost all of my gift buying done so I think I’m doing not too badly!

   Our weather here has been quite chilly to say the least. It’s snowed off and on for the last week and the temperatures hover between -10 and -20 during the day. I think we must have been spoiled with all that wonderful nice weather we had all summer because it sure feels colder than that to me. Or, maybe that’s what happens as a person gets a little older.

   I know that the winter season is a little tougher on us TN sufferers. Make sure that you all wear nice warm long scarves that you can wrap around your face to keep that chilly weather at bay. When I was suffering badly I just wanted to stay inside but unfortunately I couldn’t. So, I made sure that I had my long scarf and a warm hat with me at all times. The other thing I also used to do was to wear sunglasses during the winter. I found that by protecting my eyes from the glaring snow then the TN wasn’t quite as bad.

   On another note, is everyone enjoying the newsletters? Are there any other changes that you would like to see? Please let us know.

   I hope everyone has a very happy holiday season. See you next month.

Patty

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